Finding Some Calm After Living With ‘the Shakes’

JANE E. BRODY

Tuesday

May 29, 2007 at 5:41 AM

An estimated 10 million people suffer with essential tremor, often for decades without knowing what is wrong.

As Sandy Kamen Wisniewski remembers, her hands always shook. She hid them in long sleeves and pockets and wrote only in block letters in school because at least that was readable. The tremor became much worse as she entered her teenage years, and if she was upset or under stress, it grew so bad she cringed with embarrassment and decided that it must all be psychological.

Ms. Wisniewski, now 40, was 14 when she learned that she had not an emotional disorder, but a neurological condition called essential tremor — “essential” not because she needed it, but because no underlying factor caused it. It was not a prelude to Parkinson’s disease, nor was it caused by a hormonal problem, a drug reaction or nervousness.

(Many people thought that Katharine Hepburn had Parkinson’s disease, when in fact she shook because she had essential tremor, as does Terry Link, a state senator in Illinois, and Gov. Jim Gibbons of Nevada.)

This disorder, which in most cases is inherited, is so misunderstood and so often misdiagnosed that Ms. Wisniewski, who lives in Libertyville, Ill., decided to write a book about it. Called “I Can’t Stop Shaking,” the book was self-published last year through Dog Ear Publishing in Indianapolis. Her intent is to help the estimated 10 million people who suffer with essential tremor, often for decades without knowing what is wrong.

John, for example, whose head shook uncontrollably, spent 27 years “being tested for nearly everything,” as he relates in the book. He even had an M.R.I. and was told by the doctor that there was nothing wrong with him.

Modern technology helped him learn the truth when he typed “head tremors” into a computer search engine and found the Web site for the International Essential Tremor Foundation. His shouts of joy upon recognizing his disorder woke his wife. He then recalled that his grandmother and all his cousins had what they called “the shakes,” also without knowing why.

Only a small minority of patients with essential tremor seek treatment, Ms. Wisniewski’s book says, although there are several medications that help and, for intractable cases, a surgical procedure that can greatly reduce, if not eliminate, the tremors.

For Shari Finsilver, who never even told her parents about the hand tremors that began at age 11, the surgery she underwent in her 50s, called deep brain stimulation, was “a life-altering experience, like someone awakened from a lifetime coma.”

As she wrote in Ms. Wisniewski’s book, “I immediately began doing all the things I had not been able to do for 40 years: write by hand, use a camera, cut with scissors, make change at the cash register, sign checks and credit card receipts, enroll in a public speaking course, dance with men other than my husband and son — all the things most people take for granted.

“But best of all, I was able to walk down the aisle at my children’s weddings, and cradle my grandchildren in my arms with steady hands.”

A Tremulous Mutation

One thorough study has indicated that in 96 percent of cases, essential tremor is familial, a result of an autosomal dominant genetic mutation. That means that every child of a person with the condition has a 50 percent chance of inheriting it. And most people, after learning the nature of their problem, are able to trace it from a parent and other family members. But the so-called penetrance of the mutated gene can vary widely, resulting in different degrees of disability.

The damaged gene interferes with voluntary muscles and can affect any body part, hands most often, but also the neck, larynx (resulting in a tremulous voice) and, less often, the legs. The tremor disappears at rest and during sleep, but becomes apparent when a person tries to do something with the affected part and is made worse by stress, fatigue, caffeine and anxiety.

In people with hand tremors, the shaking starts when they try to write or hold a cup of coffee or eat with a utensil. Many people with essential tremor devise ways to avoid such activities, like eating just sandwiches or never eating in public, typing instead of writing or paying by credit card to avoid writing a check.

One woman in Ms. Wisniewski’s book was able to return to college when she learned that disability laws entitled her to a note taker for all her classes. But many employment opportunities are out of reach. Jean Moore worked in a payroll office until she could no longer read her own numbers. Another woman was fired from her job as a waitress when she could no longer carry cups of liquid and plates of food without spilling them.

Head tremor is more difficult to disguise. Some people sit with their elbows planted on a firm surface, holding their head in their hands.

While the disorder can show itself at any age, essential tremor usually does not become apparent until midlife and then worsens with age.

Treatment Options

In diagnosing essential tremor, a doctor must first rule out other causes like medications, drug or alcohol withdrawal, excessive caffeine intake, overactive thyroid, heavy metal poisoning, fever and anxiety. A doctor also must check for other neurological conditions like Parkinson’s disease, multiple sclerosis or dystonia.

A number of drugs have been found, mostly by accident, to relieve tremors. They include beta blockers like propranolol, marketed as Inderal, used mainly to control high blood pressure; primidone, found in Mysoline; and topiramate, or Topamax, used mainly to treat epilepsy.

Several other drugs have helped some patients, and sometimes a combination of medications proves helpful. Dosages are limited by the patient’s ability to tolerate side effects. Injections of botulinum toxin A, in Botox, help many people with head tremors.

If drug treatment is not helpful, implanting a stimulatory in the thalamus of the brain can block the nerve signals that cause tremors in the upper extremities. The procedure has its hazards and is usually a last resort.

Most people with essential tremor have discovered on their own that alcohol provides temporary relief. But over time, more and more alcohol is needed to be helpful, so excessive intake and alcoholism are real dangers. This remedy is best used sporadically.

Members of the essential tremor foundation have provided a host of “survival” tips that Ms. Wisniewski lists in her book. They include these ideas:

¶Using half-full mugs and holding them with all five fingers on the top.

¶Using a travel mug with a lid and straw.

¶Asking the server to deliver your plate with the food already cut in bite-size pieces.

¶Using a bib or fastening the napkin under your chin with a dentist’s chain.

¶Writing with a fat pen that has a rubber grip.

¶At the computer, wearing wrist weights and keeping palms anchored to the front of the keyboard.

For further information, including support groups for people with essential tremor and their families, the foundation has a Web site at www.essentialtremor.org, and a toll-free telephone number, (888) 387-3667.

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The chart with my column last week on jet lag should have included the recommended dose of melatonin for changing the body clock. The dose should be half a milligram or less, preferably 300 micrograms, except for bedtime use, when 3 milligrams is acceptable.

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